Is There a Cure for Crohn's Disease?

Crohn's Disease may be caused by a bacteria. It could be treated and prevented.

Through luck, hard work, good fortune, perseverance, and wonderful doctors, I seem to be one of the few people in the world who can claim to be “cured” of Crohn’s Disease. I’ve told this story before, in several places, but I feel a need to get the information out to a more general audience, even though this is not a psychology story but a medical and scientific one. In brief, I was treated for 6 years with medicationsn normally used for multidrug resistant TB and leprosy, under the theory that a particular germ causes Crohn's Disease. I got well, and have been entirely well since 2004. I do not follow a particular diet, and my recent colonoscopies and blood work have shown that I have no inflammation. The rest of these 3 blogs will explain more of the story.

But that journal is not highly visible. Since 8 years has gone by, and I have much more information now, I am going to put this on Psychology Today, for the benefit of all of those who suffer from Crohn’s or who love people who suffer from Crohn’s. I will have to tell this story in several segments, since Psych Today restricts individual posts to about 800 words. Please bear with me. I will be providing a lot of information, references, and information that is crucial to individual and public health.

I will update the posts and write a blog about any new and important developments.

Please read all 3 posts before you write to me. You may certainly write or comment, but I hope that most of the basic information is covered in the 3 blogs. In particular, if you have trouble opening a link or finding them, or there is basic information that is confusing, by all means, let me know!

Single case reports are no longer the fashion in modern medicine. We all know that an n of 1 plus 1 plus 1 plus 1 ad infinitum equals nothing in terms of proving causality in “evidence based medicine”. Proving anything in the case of Crohn’s Disease is difficult. See this excellent review of this situation, Causality and gastrointestinal infections: Koch, Hill, and Crohn’s by Anne-Marie Lowe, Cedric P Yansouni, and Marcel A Behr, Lancet Infect Dis 2008:8: 720–26. You must understand that for scientists today, a single case report is virtually meaningless. However, my victory over Crohn’s Disease doesn’t prove anything by itself, but I think that it matters insofar as it suggests the desirability of pursuing a more detailed scientific inquiry. Furthermore, there are hundreds of thousands of people with Crohn’s, many of them children, who are being treated under a different paradigm, and with variable success. Moreover, I think many of those people got sick because they consumed contaminated food products without knowing it, sometimes years before the disease manifested itself. I think there is better way to treat Crohn’s, and better yet, to prevent it. In brief, I think I was “cured” of Crohn’s Disease with antibiotics directed at the eradication of Mycobacteriumavium subspecies paratuberculosis.

Background: MAP is a heavy walled bacteria in the same family as leprosy and tuberculosis. In 1894, two veterinarians, Dr. H.A. Johne and Dr. L. Frothingham, identified this organism in a cow with weight loss and poor milk production in Germany. It is an acid-fast bacterium, like TB and leprosy, but has other properties as well. The best place to read about MAP is on the web site www.johnes.org

Farmers rapidly learned that their cows could develop either bovine TB or what came to be known as Johne’s Disease. Both were serious and expensive for the farmers. However, for various reasons, everyone agreed that tuberculosis could be transmitted from cows to people, and many public health measures were put into place to stop bovine TB. However, to this day, the USDA denies that MAP is a “zoonotic disease”, a disease that can be transmitted from animals to people. The ostensible reasons for this are that MAP cannot be visualized in human tissues with ordinary microscopes (while it is easy to see MAP in animal specimens); PCR studies and other DNA fingerprinting technologies yield ambiguous results; and nobody dares to try the experiment to prove Koch’s postulates, which would be to grow human MAP in culture, and then feed those germs to human infants. That would be immoral and ridiculous. For various reasons, scientists dispute the claim that MAP causes Crohn’s Disease because Koch’s postulates have not been fulfilled, even though nobody has ever grown M. Leprae (the germ that causes leprosy) in culture. It has to be grown in the foot pads of armadillos…. Leprosy is known to be causes by a specific cousin of MAP, and is managed with antibiotics. Leprosy has never been grown from humans in human media. Koch’s postulates are the old fashioned way to prove beyond a doubt that a particular germ causes a particular disease. It is not applied to viruses, prions, or other pathogens. Even though MAP comes very close to meeting Koch’s postulates, its pathogenicity is disputed. MAP can be visualized with special special microscopes. MAP is found in biopsies from patients with Crohn's. And some researchers claim that they have seen living MAP in the biopsy speciments and breast milk of Crohn's patients. However, nobody has taken identical twin human infants and fed half of them with milk and meat contaminated with MAP and fed the other half clean milk and meat products. It would be immoral! However, a scientist was able to isolate and grow MAP from human Crohn's patients, and then feed his cultures to baby goats. They did get inflammatory bowel disease.

As a result of the USDA decision, animals that test positive for MAP are not culled and eliminated from human food products. They can be sold for meat, into the food supply. This cheap meat from "downer cows" often goes into school lunch programs, because it is inexpensive. Moreover, viable MAP can be cultured from milk, including pastuerized milk, around the world. MAP is a very stubborn bacteria, resistant to heat and chlorine. It thrives on biofilms, and has a persistent spore that can last for years. The incidence of Crohn’s Disease in the world has grown in proportion to the use of dairy products. For example, Japan had little Crohn’s 100 years ago, and now it is becoming a significant problem. When you go to the grocery store and consider buying raw milk products, remember that MAP is endemic to cows, sheep, and goats, and roughly 1% of pasteurized milk in the US contains viable MAP.

Hi my name is Loretta Washington my aunt has been suffering from crohns diseases and I'm trying to get a
Hold of any one that can help her I love my aunt with all my hart please if you know any way to cure crohns disease please email me back

Please read the two articles that I posted carefully. There are no shortcuts. My two posts contain and lot of information, and until you read them carefully, you will not understand what i am trying to say.
After you have read the two posts and the references that I give in the posts, I would be happy to reply to specific questions.

Hi,
I'm a physician and at 53, I'm facing a near-certain Crohn's diagnosis. My symptoms fit perfectly. I had an MRI that showed ileocecal submucosal thickening (6 cm area). I had a colonoscopy with erosions noted 2 years ago, but biopsies were not conclusive. I think a new colonoscopy will be done soon, but I believe I have Crohn's, early, mild, involving at present mainly the ileal-cecal area.

I'm interested in the possibility of trying anti-MAP therapy. I noted you took it despite negative tests. Do you have any recommendations for physicians on the East Coast who work with MAP for Crohn's? (DC/Baltimore area of primary interest)

ear Dr. Mann, I've really said all I can on this site about MAP and Crohn's. There are very few physicians who specialize in the treatment. I suggest you look at the website anti-MAP.org,
and my own essay called "Grow your own doctor."
https://anti-map.org/index.php/getting-started/grow-your-own-doctor

The RedHillBio study is another option, and links to that project are on this site or the others I've referenced. I'm sorry I cannot be more specific. Best wishes to you for good health!

I've always thought my 36 yr history of Crohn's was related to milk! At age 18 I went off to college and got in the habit of running in the cafeteria and grabbing a chocolate milk to drink on my way to my first class. It was during this time that I started having cramping and diarrhea shortly after drinking the milk. I stopped drinking milk, but it was too late, as I was diagnosed with Crohn's at age 19. I've been in the hospital over 100 times, and had 5 small bowel resections. I now have short bowel syndrome, and my health is very fragile. I just want to be well enough to enjoy my precious little grandchildren. Thanks for sharing this info. What medications did you take to get rid of this bacteria? I'm lactose intolerant, and no longer eat or drink milk products, and don't eat red meat because it's difficult for me to digest. I would love to be cured of my Crohn's.

In Part 2 of this article, I give a detailed answer to the question, what antibiotics did I take?
Please read it carefully.
The antibiotics are complicated - they are usually used to treat multidrug resistant tuberculosis and leprosy. Clarithromycin, Rifabutin, and clofazimine. The doses varied, with a slow start up and a slow withdrawal. You cannot or should not just start taking these unless you have a doctor who is skilled in monitoring both your Crohn's Disease and possible side effects. Monitoring includes liver function tests, complete blood counts, eye examinations, and inflammatory parameters. As I say in part 2, if you want to try this path, you need to do a lot of reading to understand exactly what is being proposed, and you need a compassionate and curious doctor who will also read a lot and follow you carefully.
Best wishes to you. If you find a doctor who is willing to learn, I would be willing to help that doctor to help you!

Dr. Lipton, I can't get the link to part 2 to open. Can you help me with this? I'm anxious to read it. I live in Chattanooga, TN. I don't know if my GI at Vanderbilt University Hospital in Nashville would work with me on this. He just pushes all the biologic drugs on me even though they've caused me horrible side effects the latest being a sepsis infection that almost took my life. Do you know of a doctor that would work with me? I'm willing to travel. I've flown to NYC five times to see a Crohn's guru who did allot of research on Crohn's, but now he's retired. Thanks in advance, Judy

Try going to the home page http://www.psychologytoday.com/blog/pura-vida
Then scroll through the posts until you get to Part 2 of "Is there are Cure for Crohn's?"
If you still can't open it, I will send your comment to the editor for help. Over 600 people have read the blog, so I wonder if there is a problem with your computer, like cookies or something. Go to your history, empty the cache and try again, or try with a different browser.

I have not had much luck working with GI doctors on this. As I say in the blog, your best bet is probably to find a local primary care doctor with a high IQ and real curiosity. Then give that person a whole lot to read and think about. If you find a single good primary care doctor with an open mind, the international experts will help your local doctor to help you.
I do not recommend any particular US doctors. My major recommendation is to do a whole lot of homework, educate yourself, and then find somebody who will listen and learn. The MAP treatment is not difficult, not complicated, and less dangerous than anti-TNF drugs, although it does take careful monitoring for side effects. Most of the monitoring is done with blood tests.
If you can't open the page on your computer, try somebody else's. If that still doesn't work, let me know and I'll pass your complaint on to the editor.

Just switched from my tablet to my laptop, and had no problems at all! You have provided good info, and I shared it on Facebook, and plan to share it on the Crohn's blogs I follow. My son's father-in-law is an open minded Internist. I may talk to him about this, and see if he would be willing to prescribe the meds oversea my care. I just got my latest labs in the mail today, and my liver enzymes are elevated, and my GI wants me to have more labs drawn. I don't know if this would present a problem, but will let any doctor I discuss this with have copies of my latest labs.

I'm glad the web site opened up ok.
If you have abnormal labs of any sort, you have to be very careful before taking any new medication. Elevated liver function tests suggest your liver is not working quite right, and that could be a problem for three reasons: you could have a liver disease; additional medicines could make your liver worse; or you could have unusual reactions to medicines. This is why I keep saying - never try any combination of medicines for MAP (or anything else!) without careful supervision and monitoring. This is probably a good rule for the rest of your life. I get tested at least yearly, and I am not taking any Crohn's medicines and have no abnormalities. At least none that I know of right now!
Best wishes!

Hi, did you know that there is a research project at Kings College London where they have developed a vaccine against the MAP infection and are developing a test for it? Amy Hermon-Taylor is running the London marathon in April 2014 to raise funds for the research. See her web page at http://www.justgiving.com/Run-For-Crohns-MEN3936
for more information.
If MAP causes Crohn's disease, it would be fantastic if this research led to a cure, so please support it in any way you can.

I have met Dr. John Hermon-Taylor, and respect his work. Is Amy his daughter? I do not know if the vaccine is up and working yet. There is a vaccine for Johne's Disease in cows, but it is very controversial. Certainly, if Dr. J HT has got a vaccine, this is a marvelous development. Could you please add more information, and keep us posted?

Hi, just stumbled across you post. Prof. Hermon-Taylor has developed a diagnostic test for MAP and a vaccine. I am working with him and his daughter Dr Amy Hermon-Taylor on a website to raise awareness and funding to move ahead with a 2 year human trial. For more info www.facebook.com/crohnsmapvaccine and the website will be launched soon, and we will use facebook to announce when.
Kind regards.

Doctor Judity, I can't thank you enough for your generosity in posting these articles! For some reason I cannot find the second part of this article, but I will continue trying to find a way to it. Is there any way that someone could post the page for me?

My daughter has been battling stomach cramps and diarreah for the last two years. She has gone from doctor to doctor and they can't figure out what is wrong with her. Her current doctor, an osteopath and very open to treating with proper nutrition and supplements has just told her(yesterday, in fact) that he believes that she has crohn's, and she needs to have a colonoscopy.

When our daughter was younger(she is 22 now)we had cows in our pasture which were diagnosed with Johnes disease. Once that was discovered, the cows were removed. We also had goats that mysteriously died...one after another. We had them tested by a university, but to no avail...they couldn't find the cause of their death.

A couple questions: Is a colonoscopy the best way to detect crohn's?
If it is crohn's, do you believe that all crohn's is caused from this bacteria? Or is this one "form" of crohn's.

If our daughter picked crohn's up from the animals, why didn't all of the rest of us pick it up, too? We also live in a part of the country that has astronomically higher amounts of cases of crohn's comparted to other areas... Selenium is also extremely low in this area....is there a connection to the bacteria being able to take hold in a low selenium situation?

Are there any doctors in this country that are experienced with using your treatment? Our daughter is in the Denver area, so more specifically, are there any doctors in that area that have experience?

I am so sorry to hear about your daughter's illness. Here is a link to Part 2 of my blog:
http://www.psychologytoday.com/blog/pura-vida/201311/is-there-cure-crohns-part-2
Please let me know if you still can't open it. If so, I'll contact my editor at psychologytoday.

To answer some of your questions:
First, try to read Part 2. Please write to me asap if you still can't open it.

Yes, a colonoscopy is the first part of diagnosing Crohn's. It should be done asap. It is also important to have some bloood tests to look at evidence of inflammation. In specific, an easy old test is called an ESR, erythromycin sedimentation test. It is just a very general test of inflammation. The second is more specific, call CRP for "C reactive protein". She should also have a complete blood count to check for infection or anemia.

I cannot say that all forms are caused by this bacteria. But I think many cases of Crohn's are caused by MAP. There is no simple way to diagnose a MAP infection unless your daughter participates in the RedHillBio clinical study, http://www.redhillbio.com/product-pipeline/rhb-104/ RedHillBio (RHB-104). You should contact their site to see if there is a participating institution in your area. Since your daughter had clear-cut exposure to Johne's disease, it would be extremely important to have her checked for MAP. If you can't get into the RedHill study, write to me again and I'll try to pull some strings to get her tested.

Susceptibility to Crohn's may be genetic, a genetic difficulty in cell way recognition, called the NOD-2, CARD 15 anomaly. That may be why some people can eat MAP burgers all their lives with no problems, and others get Crohn's.
I don't know of any correlation with selenium.
Best wishes to you and your daughter.

Hi, I'm hoping to reach desperate people with my story of HOPE. 35 years ago I had serious Crohn's disease and had a section of colon and a section of small bowel removed. After the operation I weighed 98 pounds (I am 5'5"). Two years ago, after my first colonoscopy (recommended due to my age) the specialist asked me "Are you SURE you had Crohn's disease and an operation? There is absolutely no scarring and no sign that you ever had either!" He actually did NOT believe me! In desperation all those years ago, I looked into natural remedies. I used Slippery Elm as an abdominal poultice, and also ingested it, and I made Mullein tea and drank it. That is All I did, and I got better. Over the years, occasionally I would have a flare-up and 1 - 3 days of using a poultice on my tummy overnight would completely get rid of the symptoms. I would like to make the offer that anyone who wishes to contact me about this for details is welcome to do so. My email address is: kathlloyd@gmail.com

Dear Kathy,
I'm glad that slippery elm and Mullein tea helped you with your Crohn's, and I will allow your comment to stay up on the web so that people can see it - one time. Please do not keep posting it again and again. This story is about MAP and Crohn's Disease. I'm sure there are lots of social media sites where you can post other ideas and options.
As I keep saying, I am a scientist, and my work and opinions are based on traditional science. I am not a fan of alternative medicine, naturopathy, etc. and there are lots of places where people can read about these approaches.
Thank you for writing. I hope you stay in full and complete remission for the rest of your days!
Please do not keep adding more about these herbs on my web site. It may be perfectly wonderful information, but it is not compatible with the purpose and intent of my blog.
Best wishes!

Hi Judith, yes Amy is Professor John Hermon-Taylor's daughter. This is an extract from her "Justgiving" website.
The Crohn’s Vaccine and the new diagnostic test:

A modern Treatment Vaccine against MAP has been made. Preliminary studies in animals have shown it to be safe and effective. Now a trial in humans is needed to take the vaccine from lab to clinic. If it works, it could cure Crohn’s; the Crohn’s Vaccine is the only potential treatment currently on the horizon which offers the hope of CURE rather than abatement. The Vaccine also requires a companion diagnostic test which will allow doctors to monitor a patient’s response to the vaccine: this final piece of the puzzle is currently under development at KCL –it requires £100,000 and about a year’s work to finish.
I would encourage everyone to view her webpage at http://www.justgiving.com/Run-For-Crohns-MEN3936. I'm sure she will use it to keep everyone informed of new developments.
Many thanks
Jacky

Thanks to you, Jacky, for sharing the information. It appears that Amy is a physician herself, doing marathons to help raise money for her father's important research. Dr. Hermon-Taylor was an early pioneer in the field, the mentor of my own doctor, Dr. Tom Borody. Three cheers and more for Amy and her father, Dr. John Hermon-Taylor!
A vaccine would be a wonderful development indeed. No doubt!
However, prevention is a first step and it could be done right now, starting today, if people push their governments to demand that sick animals not be made into food products. Let's say there is a shadow of a doubt, perhaps there is some chance MAP does not cause Crohn's. Who wants to eat meat and drink milk from animals sick with Johne's Disease anyway? And if MAP does cause Crohn's in susceptible individuals, isn't it almost a crime that governments allow this pathogen into the food chain? MAP is hard to kill with chlorine and heat. It happily lives on biofilms in dirty water. It lives in virtually every mammal that has been tested. While we wait for a vaccine, why not embargo foods from animals with Johne's disease? At least to me, prevention comes first. Treatment and vaccination are important too, to help the afflicted and reduce the risk to people with susceptibility factors. More people are sick with Crohn's than were ever sick from Mad Cow Disease. Why do we tolerate this?

I am curious to know do you think MAP can be "manufactured" in baby formula?
One of my theories is my daughter had Crohns in her genetic make up (even though we can't trace it) as she had terrible allergies and intolerances as an infant or my second theory is that it mutated in her through exposure to radiation via ultrasounds and X-rays. You seen my daughter was born with congenital dislocation of both hips and has had over 30 X-rays and 13 surgeries. My daughters Crohns has been contained in her pelvic area only. My daughter was 16 when diagnosed but when I look back she started to show symptoms at age 12 when she had yet another major hip surgery, this then became infected. Currently my daughter is in remission thank goodness and has been for two years though she remains on biochemical meds.
When my daughter started to require surgery as an infant I introduced baby formula to feed her as well as breast milk, this is when all the allergies started at 4 months of age. I would be interested in what you think.

Dear Leonie,
MAP is a natural bacteria that is not manufactured. It is not genetically engineered. It is totally natural, just like tuberculosis and leprosy. MAP existed long before modern microbiology. Just because something is natural, like tuberculosis, smallpox, leprosy, and influenza, does not mean it is "good" or healthy.
That being said, it appears that MAP can be transmitted in milk, whether from human milk or cow milk. There are data that suggest that living MAP can be cultured from human breast milk if the mother has Crohn's Disease. Dairy farmers often try to separate calves of cows with Johne's Disease away from their mothers, because the milk of Johne's Disease cows may have MAP.
There is no published data - yet - about infected baby formula, but research is underway.
MAP does not happen from x-rays, ultrasounds or radiation. It is a natural bacteria found all over the world in many animals and in biofilms over water where infected animals drink and poop.
As far as I know, MAP infection is not related in any way to allergies. It may be related to an inborn genetic susceptibility. Some people may have genetic defects that make their macrophages (big white cells) not attack and destroy MAP correctly. This is not related to allergies, radiation, or any of the things you mention. But your basic question - could there be MAP in infant formula, or human milk for that matter - is a good one, and soon I think we will have answers.

Hi Dr. Lipton. Thank you so much for sharing your experience. I have Crohn's and for a while the only thing that would really help was the antibiotic Cipro. I got pregnant and was unable to take Cipro so I was hospitalized and put on IV steroids as well as Sulfasalazine since I also have arthritis, among other extra intestinal symptoms. I was blessed with almost 2 year remission, but once I got my first postpartum menstrual cycle, my Crohn's symptoms are returning.

My concern was that in the above comment you stated that MAP can be found in human breast milk. I've been breastfeeding my daughter and am now afraid she may be susceptible. I guess now it may be too late. I had read statistics that breastfeeding reduced the chances of Crohn's, but maybe that doesn't apply to breastfeeding if you have Crohn's. Do you have any other information on that?

I'm interested in trying the therapy you did if I can't get this flare under control, since I did respond to Cipro it seems there is some kind of bacterial factor. How many years is recommended to be on the protocol, is it always 6 likes you had done, and what type of side effects did you have? I worry about completely ruining my gut flora, but in all reality it is probably already ruined. Did you take probiotics while on the therapy?

Hi, Amber, I'm sorry to hear about your troubles and I'll try to give reasonable answers. First, I did not say that MAP is always found in human breast milk - I said that in 2004, in one study (published by Dr. Saleh Naser, Lancet), he found MAP in biopsy specimens, blood and breast milk of Crohn's patients. I don't think that study has been duplicated, so I would not take it as proven. Moreover, as I mentioned, research is going on about MAP in baby formulas. The data are not out yet, but I will post that data when it is available. I guess it is a Catch 22. If MAP is found in cow milk, that is a problem for susceptible individuals. If MAP is found in breast milk, that is also a problem in susceptible individuals. Not all people are equally susceptible to MAP infection. The susceptibility factors have to do with genetic abnormalities in the NOD2-CARD 15 gene (maybe there are others as well). To the best of my knowledge, there is no easy way right now to find clear answers to your questions. 1) Maybe you have Crohn's but not a MAP infection. Right now, reliable culture and PCR are not generally available. There is no way to prove this. 2) If you are positive for MAP, nobody knows for sure (since Naser's study was not replicated) if it goes into breast milk. 3) Your daughter may not be susceptible, even if she ate what I cynically call "MAP burgers." Not everybody who is exposed to MAP gets Crohn's! I don't know anywhere that people can get genetic testing for the NOD2 gene, so there is no way to know right now whether your daughter has a problem or not. I know it is upsetting to have inflammatory bowel disease and you want to do the right things for yourself and your daughter, but first, you have to stabilize yourself and learn a lot. There is no easy answer, but there is a lot to explore.

I hope you read both part 1 and part 2 of this post. I tried to answer your other questions in part 2. Right now, there is no standard protocol for how many years a person would be on the Borody formula of clarithromycin, rifabutin, and clofazimine. I had no side effects at all, except for a slight tan tone to my skin. I stopped at 6 years because I felt really good, no other reason. We just decided it seemed like time to see what would happen. I never took probiotics, although I like yogurt and kim chee and soy sauce and even unpasteurized dark beer, all natural sources of bacteria. I also live on a farm and get pretty dirty quite often! No need for infusions of more bacteria, thanks!
I don't think it is fair or kind to yourself to think that your gut flora are "ruined." First of all, there are billions of bacteria in your gut. This is true if you took Cipro for a while some years ago. It is also true if you have Crohn's. Please don't despair. Your body probably has more resilience than you think. If your Crohn's is returning, I would follow the instructions I gave in the blog. Learn a lot about Crohn's and about your body. Consider finding out if there is a RedHillBio study site near you. If you are breastfeeding, there are a lot of benefits to that. You need to consult with a personal doctor who could help you weigh the pros and cons of treatment options, and treatment versus trying to hang in there with just supportive care while you nurse. I know you must feel really scared and in a true dilemma, but you are doing the best you can right now. The love you are giving your daughter is priceless. Don't panic, just take your time, relax, enjoy your wonderful time with your new baby. Then find a doctor who listens well and learns quickly. You need personal help to make these complicated choices.

Thank you so much, Dr. Lipton, for your prompt and thorough response, and your kind words. It says a lot about you that you're willing to spread the word about what has worked for you and help people the way that you are.

I had looked into the protocol you had done a while back when things weren't working, and I was hoping I wouldn't have to deal with these things again, but it's good to know this is a possible option. It's interesting that even after you stopped your antibiotics and ate local milk etc. that you never had a relapse. I believe I read a while back that MAP can be found even in water, but I can't recall the study etc. I had an information overload at a time when I was searching for something to work but largely forgot most of it since I had a long remission.

I can't remember, but in your article you stated you may have been helped by the last infusion of Remicade overlapping your start of the antibiotics. I believe there was something said that Remicade may have made the MAP infection more available to the antibiotics. Is that something that Dr. Borody recommended or is it as effective without it? I had Remicade in the past but it stopped working.

I so much appreciate your words of wisdom and your positive attitude and your willingness to spread the word about possible treatments for Crohn's. It's so disheartening to me that it seems like many times money and greed can interfere with possibilities for heaping others.Thank you for giving your time and spreading the word.

Hi, Amber,
Several answers: if you use the search engine scholar.google.com you can find many of the scientific answers you are looking for. For example, there is no doubt that MAP is a hearty bacteria, and it can be found in ground water, particularly in "biofilms", films of bacteria floating on top of natural water sources, especially where infected animals have pooped. It is also resistant to heat and chlorine. So, I would definitely not advise you to drink water from streams downhill from cow pastures!
The idea that perhaps that one last infusion of Remicade helped my remission came from Dr. Borody, but only retrospectively - 6 years later - when we were trying to figure out what went right. There is no way to prove it now, one way or the other. It was a pure speculation, not a plan or suggested treatment for others. The reason I mentioned it was to tell the truth, and to say that alpha-TNF inhibitors may have a significant place in MAP treatment. But I don't know that for sure.
All I know is that after months or years of illness, I was entirely well within 4 months of treatment and have stayed that way since April, 2005 - even off of any medications. I actually went to Nicaragua and drank unpasteurized milk from a cow that I personally milked. No problem!
Take care, Dr. L.

Thank you for being so kind to share your story and experience with everyone. I really admire your thoughtfulness and your willingness to help people.

I was diagnosed with Crohns early 2013 ( But I've been suffering with symptoms for about 2 years because of all the misdiagnosis's I had to go through.) I've been terribly depressed since the diagnosis. I read about your amazing story earlier this year, and because of you I built up enough courage to fly out and meet Dr. Chamberlain in Billings, Montana to see if he could help me. After running a couple of tests to reconfirm I have Crohns, he decided to put me on the Anti-Map treatment while I'm tapering down predisone. I've been on this treatment for almost a month now and I cant really tell if its working or not.

The antibiotics that Dr. Chamberlain put me on is Ethambutol, Clarithromycin, and Rifampin. He wants me to stay on this treatment for the next 3 months. My question to you is, do you remember how long it took for it to work for you? Did you have any symptoms when you first started the treatment? Did you go have any symptoms while on the treatment?

Hi, Jake,
The biggest problem that I faced after starting MAP treatment was "secondary adrenal insufficiency." That is to say, having been on prednisone, the taper off of it was truly terrible. I fainted several times in public, and then was tested for adrenal insufficiency, or so called "iatrogenic Addison's disease." If you have been on prednisone, it can take months or years to get off of it. Prednisone is 4-5 times stronger than your own natural adrenal hormone, cortisol. When people are treated for Crohn's and slammed with high dose prednisone to reduce inflammation it can work in the short run, but over the long run it can take a very long time to regain normal adrenal function. During that period, one can feel run down, faint, tired, stupid, and many other physical and psychological symptoms. A slow taper off prednisone, or even a transition and slow taper to hydrocortisone (natural cortisol) may help. Not everybody has this complication, however.
I had no problems at all starting the antibiotics, and felt great within 2-4 months, except for adrenal problems. That took a while to stabilize. But my gut was calm, no more diarrhea, no fever, no skin lesions, no cramps, good appetite and normal inflammatory parameters within a few months of starting treatment. Best wishes to you! Dr. L.

I am so pleased to read that you are cured of Crohn's Disease! I read your story prior to our first visit to Professor Tom Borody in May 2011 and it helped convince us that we were going down the right path.

My son was diagnosed with extensive Crohn's Disease just a few days prior to his 13th Birthday. He is 16 now and has been off all medication for 11 months - Prof. Borody decided to try FMT first due to a super-infective c-diff that my son had. We continued treatment for 18 months and he is not only in complete clinical remission, the last colonoscopy/endoscopy could not find any trace of Crohn's Disease anywhere (he had been riddled with it in late 2010, duodenum, terminal ileum, descending colon, ascending colon and rectum). Complete histological remission, I believe it is called ... Professor Borody said you'd never know he'd had it it was so good! I would love you to read his story when you have a spare moment!

When my son was first diagnosed the long term outlook was rather grim because it was so extensive and he was so young. Now his future is full of hope! Thank you for continuing to share your story - it helped us at very difficult and upsetting time more than you'll ever know!

Part 1
http://www.fecalmicrobiotatransplant.com/2013/07/crohns-disease-fmt.html

Part 2
http://www.fecalmicrobiotatransplant.com/2013/11/crohns-cure-fecal-transplant.html

Thank you, Crohn's Mother, for your amazing story! I'm very happy to hear that your son is in full remission from Crohn's Disease, and I share in your admiration for Dr. Thomas Borody.
I did know that Professor Borody was treating people for C. difficile with fecal transplants. In fact, his paper, "Bacteriotherapy Using Fecal Flora: Toying With Human Motions" appeared in the Journal of Clinical Gastroenterology, July 2004, years before scientists in the US began using fecal transplants for C. diff. Your story is interesting because it implies that either C. diff was a source of your son's GI distress, or a superinfection, and one way or the other, implanting a new microbiome into your son gave him a new quality of life and remission from Crohn's Disease.
I'm very happy for you and your son! Please keep us posted. Best wishes for a long, healthy happy life.

The other question is whether long term FMT treatments can actually kill MAP (just as the Anti-Map therapy does?). Judith, you and my son (and others) as you know, are pioneers of these groundbreaking treatments and we won't probably know for many years yet the answers to all the questions and theories we have! No matter what though, it's wonderful isn't it to know that there is very real hope for sufferers of this awful scourge we know as Crohn's. The 14 year old boy who's case study is in this paper is my son http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3742951/

I'll keep you posted on his progress and keep watching yours too! Success stories such as yours are truly uplifting, and I'm so grateful for all you've done to help people like me be informed of the truth :-)

Budesonide is an inhalation medication prescribed to treat asthma attacks and mild-to-moderate Crohn's disease. It belongs to a class of drugs called corticosteroids that prevent asthma symptoms such as shortness of breath, troubled breathing, and wheezing.

Please know that your case is the exception, not the rule. There is no evidence to suggest that Crohn's can be prevented or cured. You may, in truth, be giving some individuals false hope that can not be afforded in place of quality medical screening and treatment. While you may find your results based on "science" and a willing medical provider, I would not suggest that this article or your experiences be used as any sort of treatment guideline, experimental study or "truth" much less in a pop psychology magazine.

I'm subscribed to this comment section, so I saw your comment. I understand your point of view, but I appreciate that Dr. Lipton is sharing her experience here, and I don't think in any way she is telling people to not seek out medical advice. In fact she mentions that you really need to be monitored if you're going to take the antibiotic therapy. I'm not sure how taking antibiotics and being monitored on them doesn't constitute as being medically screened and under treatment.

You may have read that they are currently studying the triple-antibiotic therapy in clinical trials right now, and I know one of the top doctors at an IBD clinic in Chicago prescribes it for some of his patients. I'm not on the therapy, but I am considering it in case what I'm not now doesn't work.

I don't see any harm in Dr. Lipton sharing her experiences with her caveat that you be seen by a medical professional, which she mentions. There are different options for Crohn's, but honestly, there aren't that many, and unfortunately, many times the meds stop working. I think it's good to educate ourselves of what options we have, perhaps this may not be the first choice, but I think it's good to get the word out for other choices when all else fails.

Is this a cure, who knows? Crohn's manifests itself in different ways, so who knows if all cases of Crohn's are caused by the same thing. Dr. Lipton uses the word cure in quotes, so we know she is cautious. I hope we do find a cure soon, and until then, Crohn's patients need to educate themselves about what types of options they have.

You can read my story, which I posted to Tracy, below (it should appear shortly). I think "hope" is a very valuable part of the healing-equation. I had severe Crohns about 35 years ago, and had 2 sections of bowel removed...almost had to have a colostomy - I had the pen-mark on my abdomen showing where it would be, should they need to do it!! For decades I have had no symptoms and as of 2 years ago, the physician doing a routine colonoscopy was astonished to find no Crohns, no scarring, and no indication of me ever having had Crohns. I am not necessarily saying Slippery Elm and Mullein Milk will help everyone, but it's a pretty easy and inexpensive thing to try! The more information people share, the better. And, in my opinion, the more positive we can be, the more chance we have of healing. :-) Kath

Dear Bryce,
I really have no special or authoritative information about holistic/organic approaches to treating Crohn's. Before I got ill, I tried to eat mostly organic foods, with only a small amount of meat. I have been a food coop member since 1967, interested in macrobiotic cooking as well as Moosewood and Laurel's Cooking.
These healthy habits did not prevent me from getting quite ill from Crohn's. Early on I looked into the specific carbohydrate diet, and I was underwhelmed with the data and anecdotes.
So, it's great that you've done so well! Good for you! I have nothing to add about your recovery or treatment regime. Best wishes, Dr. Lipton

I've done a lot of research on Crohn's/ MAP/AMAT/MAP vaccine, including your blog. My nephew was diagnosed with crohn's 7 months ago. Enteral feeding didn't work- he was too sick to start with. Steroids sort of helped but only when he was on them, did not bring about remission. He had a reaction to azothioprine and is now on Infliximab (3 infusions later) which is helping but he still has symptoms. He's also been hospitalised with severe acne and infections. My research has lead me to believe that surely anti- MAP is worth a try. At least it's aiming to treat a cause rather than a symptom. We are in the UK and I am aware of the research at Kings College, under Dr Herman Taylor. I just don't know where to next . His quality of life is awful, he's often off school, though is quite academically gifted. How does the ordinary person go about what you have achieved? He's only 16- perhaps he has to wait, by which time there could be so much scarring and damage.
Many thanks
Leah

Dear Leah,
I have bad news to report. Although my gut has been free of Crohn's since 2004, I have developed inflammatory arthritis, otherwise called enthesitis, that is probably secondary to the underlying autoimmune disorder related to my Crohn's. I need to write a new blog about it. I don't know what comes first, infection with a pathogen like MAP, and then an overactive immune response, or a distorted immune system that responded well to antibiotics. I'm confused. If I were you, I would still contact Dr. Hermon-Taylor or his daughter Amy Hermon-Taylor and get their advice. I'm sorry to hear of your son's suffering.